Tuesday, October 8, 2013

October is Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, as a parent of a child with DS I thought it would be fun to share some fact about Down syndrome. In this post I wanted to be more informative and help people understand having a child with Down syndrome is not the end of the world, in fact it’s an awesome journey only a lucky few get to experience. People with Down syndrome are more like you and me than you may think. I know a lot of these facts can be goggled but I thought I would be nice and pile them all in one place. I know there are tons of facts but I came up with 10. Alright let the facts commence!

FACT 1: The medical treatment of people with Down syndrome has advanced remarkably over the years. Because of this, the lifespan of people with Down syndrome has also increased. In 1929, the average lifespan of a person with Down syndrome was just 9 years old. In 1983 it rose to 25. Today, people with Down Syndrome are living well into their 60’s and will likely continue to rise with the advancement in medical care.

FACTS 2: 90 % of pregnancies with prenatal diagnoses of Ds are aborted.
(If I could talk to one of those parents I would tell them, yes, having a child with Ds can be very difficult. Yes, it will change your life in ways both good and bad. But it's worth it.)

FACT 3: Some scientists believe that people with Down syndrome may hold the key to a new generation of cancer drugs. Why? Solid tumor cancers are very rare in people with Down syndrome. It has been found that one of the genes on chromosome 21 encodes a protein that blocks a factor needed for blood vessel growth. They found that this protein, DSCR1, is overproduced in people with Down syndrome.

FACT 4: There is a baby born every 12 seconds in the USA; the CDC estimated the frequency of Down Syndrome in the United States at about 1 in 691 births. That's 6000 each year out of the 4 million babies born total each year.. It is one of the most common congenital disorders, occurring in all races, ethnic groups, and nationality.Some more #’s did you know about 38% of Americans know someone with Down syndrome and there are more than 400,000 people living with Down syndrome in the United States. There are about 316 Million people in the USA that means about 120 million people know someone with Down syndrome! So as you can tell by the numbers I’m pretty lucky to be one if the chosen.

FACT 5: The appearance of children with Down syndrome may slightly differ from other children. They may have some unique medical problems, and will likely have some degree of intellectual disability. However, the severities of these problems vary tremendously from child to child. There are no "levels" of Down syndrome. A person either has Down syndrome or they don't. It can just affect people in different ways.

FACT 6: Federal Register on January 28, 2013. “We are replacing the term “mental retardation” with “intellectual disability” in our Listing of Impairments (listings) that we use to evaluate claims involving mental disorders in adults and children under titles II and XVI of the Social Security Act and in other appropriate sections of our rules. This change reflects the widespread adoption of the term “intellectual disability” by Congress, government agencies, and various public and private organizations.”
In my book this is awesome news, there is something so harsh with the word “retarded”. As a mom hearing your child classified as “intellectual disability” is a much easier to hear than the “old term”.

FACT 7: Down syndrome is not a disease; it is a genetic condition. You can't "catch" Down syndrome. A baby has Down syndrome the minute the sperm meets the egg. It's not something a woman can develop during pregnancy because it is present at the moment of conception; as soon as the cells divide. The most common type of Down syndrome is Trisomy 21 or T21; it occurs because of incorrect chromosome division during meiosis. It results in the fertilized egg having three copies of the 21st chromosomes instead of two. There are three types of Down syndrome: Trisomy 21 accounts for 95% of cases, Translocation accounts for about 4% and Mosaics accounts for about 1%.
This fact is one I find myself “spouting off” a lot. People seem to think I didn’t take care of myself or I did something to “cause” this to my baby since I had her when I was “so young”. Well I didn’t, it was something I had no control over, it was my selected journey, and I am ok with that.

FACT 8: While the age of the mother can be a factor, 80% of people with Down syndrome are born to parents under the age of 35 because younger women have babies. (If anyone is wondering I was 29 when I had Hannah.

FACT 9: A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

FACT 10: Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. If you don’t know someone with Down syndrome you are missing out. They would be your best friend and love you unconditionally.

Now you know the facts, I would like to tell you a little about how Hannah is just like any “typical kid”. She loves school, the computer, her iPad, books, puzzles, games, the color pink and anything to do with princesses. She has a smile that lights up a room and a laugh that's contagious. She gives the best hugs. She can go from sweet as pie to as grumpy as a bear in 5 seconds flat. Yep I said it! She isn’t away a sweet, happy kid. Children with DS have the same range of emotions as anyone else, people often say “she is always so happy, always has a smile on her face”...wrong!!!! She gets just as mad or sad as you or I might get. Maybe even a little more mad or frustrated then a typical person. Sometimes things are little harder for her, but that’s ok , there are something’s that are hard for me to learn. She has her own personally, she has her own way of doing things, and she has a strong will, she is my daughter and I wouldn't change one single thing about her. People with Down syndrome are capable, valuable, loving and unique individuals!

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